Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

My Gluten Challenge


pdm1981

Recommended Posts

pdm1981 Collaborator

In my last post I told the story about how I had almost every possible test done and there was no sign of Celaic Disease that they could find. In fact, my diagnosis stems from a single blood test taken over six years ago. One test. I told this story in which some people said that I should ignore my new results and get new doctors and that they must be wrong. Well I've been eating gluten for a week today and haven't had any of the symptoms so far. When I say "eating gluten", that means eating sandwiches made from 4 Hawaiian Rolls. They taste great. All I've been taking is a probotic called Florastor. Now to be clear, I'm not saying that this is a cure for Celiac Disease. If you were properly diagnosed with celiac disease, taking this will not make you able to eat gluten. If you have celiac disease you need to avoid gluten at all costs. This means that I may have been misdiagnosed. All this time I thought I was being "glutened" might have been something else. I go for the breath test on the 15th and see the doctor on the 29th. We'll see how this goes but so far there is nothing to say as far as celiac disease goes. I know there a people that are going to jump right on this and think this is foolish to believe these doctors and I should stay on a gluten-free diet but I would be foolish to not want to definitely check all the boxes and find out for sure. I'm not changing doctors. I'm seeing it through to the end. Plus, the food is sooooo much better on this challenge than not doing it at all. I'll post all the results as they come in but here's what I got so far:

I have 1 blood test that says I have celiac disease taken over 6 years ago

I had a scope done 6 years ago in which they did no biopsy and things appeared normal

I have the genes for celiac disease which means I can potentially develope it in my lifetime

This year, I have had biopsies, blood, s$#&, scopes on each end, and soon to have a breath test, and so far, NO SIGNS OF CELIAC DISEASE. ( also I'm doing the gluten challenge with no diarrhea, vomitting, etc.,)  

So what are your thoughts?

 

 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



kareng Grand Master
2 minutes ago, pdm1981 said:

In my last post I told the story about how I had almost every possible test done and there was no sign of Celaic Disease that they could find. In fact, my diagnosis stems from a single blood test taken over six years ago. One test. I told this story in which some people said that I should ignore my new results and get new doctors and that they must be wrong. Well I've been eating gluten for a week today and haven't had any of the symptoms so far. When I say "eating gluten", that means eating sandwiches made from 4 Hawaiian Rolls. They taste great. All I've been taking is a probotic called Florastor. Now to be clear, I'm not saying that this is a cure for Celiac Disease. If you were properly diagnosed with celiac disease, taking this will not make you able to eat gluten. If you have celiac disease you need to avoid gluten at all costs. This means that I may have been misdiagnosed. All this time I thought I was being "glutened" might have been something else. I go for the breath test on the 15th and see the doctor on the 29th. We'll see how this goes but so far there is nothing to say as far as celiac disease goes. I know there a people that are going to jump right on this and think this is foolish to believe these doctors and I should stay on a gluten-free diet but I would be foolish to not want to definitely check all the boxes and find out for sure. I'm not changing doctors. I'm seeing it through to the end. Plus, the food is sooooo much better on this challenge than not doing it at all. I'll post all the results as they come in but here's what I got so far:

I have 1 blood test that says I have celiac disease taken over 6 years ago

I had a scope done 6 years ago in which they did no biopsy and things appeared normal

I have the genes for celiac disease which means I can potentially develope it in my lifetime

This year, I have had biopsies, blood, s$#&, scopes on each end, and soon to have a breath test, and so far, NO SIGNS OF CELIAC DISEASE. ( also I'm doing the gluten challenge with no diarrhea, vomitting, etc.,)  

So what are your thoughts?

 

 

Any Celiac blood or biopsies taken while you have been gluten-free for six years should be negative.  You may not have Celiac, but those tests don’t mean that you don’t have Celiac.  After you eat gluten for a few months, you could test again if you want.  

pdm1981 Collaborator

Turns out the reason a biopsy wasn't taken the 1st scope 6 years ago is that everything looked normal. I'm still moving along with this gluten challenge and so far nothing has changed. The symptoms of these "flare ups" are still the same whether gluten is there or not. I actually improved slightly with the probotics (Florastor). The gas didn't go away but there wasn't nearly as much and I'm actually sleeping better. I had to stop it today because it's 1 week before the breath test. I have 1 gluten containing meal a day and I don't worry about CC anymore til this is over. Things that irritate my gut are pasta sauce and onions. Onions really kick my ass. Also things with a lot of garlic. Tomorrow I might just have a couple slices of real pizza. If not a restaurant then a kroger's 3 minute pizza.

What would you eat on this challenge?

10 hours ago, kareng said:

Any Celiac blood or biopsies taken while you have been gluten-free for six years should be negative.  You may not have Celiac, but those tests don’t mean that you don’t have Celiac.  After you eat gluten for a few months, you could test again if you want.  

 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,173
    • Most Online (within 30 mins)
      7,748

    D Luck
    Newest Member
    D Luck
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Heatherisle
      Daughter has started gluten free diet this week as per gastroenterologists suggestion. However says she feels more tired and like she’s been hit by a train. I suggested it could be the change to gluten free or just stress from the endoscopy last week catching up with her. Just wondering if feeling more tired is a normal reaction at this stage. I suppose it’s possible some gluten might have been present without realising. Have tried to reassure her it’s not going to resolve symptoms overnight
    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
×
×
  • Create New...